When Kevin and Sanjana were told their baby would be born with a cleft, they instantly recalled images they’d seen of older children with unrepaired clefts.
Kevin said: “All I could think about was the pictures of teenagers with cleft on the fundraising envelopes I passed round at church when I was growing up.
“When the nurse told us our son was going to be born with a cleft, my head literally went to that image, thinking it was unsolvable.
“Thankfully, they quickly sat us down and spoke to us – and told us about the cleft team and CLAPA.
There were 100 things going on in my mind, but this made me think, ‘okay, there’s a plan of action, we’re not alone’.”
Sanjana added: “We were so relieved to see all the babies and children on the CLAPA website and realise there’s such a clear pathway for those born with cleft. That was such a comfort.”
Arin’s cleft lip was diagnosed at his 20-week scan, and a follow-up 3D scanner picked up a “probable” cleft palate.
Sanjana said: “We hoped for a miracle, but they gave us a pretty good idea of what to expect. Arin is our first child so it was all new to us.”
Kevin and Sanjana met at university, and married in Mumbai where Sanjana was born. Kevin grew up in the UK, and runs a business development consultancy, which Sanjana supports.
They both said, from Arin’s 20-week scan onwards, Sanjana’s pregnancy was a “roller coaster” of bad news and stress, including a problem with the umbilical cord for which they were recommended an amniocentesis.
It was a really scary time, and every scan and appointment we’d be so anxious, hearts racing, wondering what they were going to tell us next.
“I don’t think we’d ever felt more low in our lives,” sighed Sanjana. “Pregnancy is such a beautiful thing. When we first found, out we were so happy, telling our family and friends.
“And then, five months in, first the cleft, and then we were wondering if we were even going to meet our baby. Thankfully, the amniocentesis came back with good news, so we tried to relax and get ready for Arin’s arrival.”
Kevin added: “It was a really scary time, and every scan and appointment we’d be so anxious, hearts racing, wondering what they were going to tell us next.
“I remember when they said children born with cleft can have other issues, including speaking, and taking more time to pick stuff up.
“As a parent, I was like, ‘oh my god, what else?’ Growing up in the UK, I came across a lot of racism, that’s just how it is, so I was then thinking, ‘oh, great, here’s my kid, who’s a brown kid, and on top of that’s he’s going to have this facial difference, and now this too, what chance has he got?’ It was a lot.”
Arin was born in July 2022, three weeks and six days premature, with a unilateral cleft lip and palate.
“Not only were we originally not prepared for Arin and his cleft, we weren’t even prepared for his arrival,” laughed Kevin.
“We had such a nice baby shower on the Sunday – the day I think Surrey touched 40 degrees. I think that’s what pushed Sanjana into labour.
“We didn’t have his car seat ready, nothing. I’d be at the hospital until 9pm, come home, and build his crib. We’d also only just moved into our new house three weeks before.”
It suddenly felt like ‘we got this, okay, we can really do this’.
Sanjana added: “I had an emergency c-section. We knew we’d need one, because Arin was breech, but hadn’t had the appointment to plan it.
“To top it all off, they found I had a low-lying placenta and said, if my waters had broken, he probably wouldn’t have survived. We were then so thankful he came early, it was such a relief to finally see him.”
Kevin smiled: “After Arin arrived, and all the stress of the pregnancy, it suddenly felt like ‘we got this, okay, we can really do this’.”
Equipped with a CLAPA Welcome Pack and supply of specialist bottles, Kevin and Sanjana felt more confident to care for Arin in his early days.
“CLAPA’s bottle service was literally life-changing for us, as we were nervous about feeding. It made such a difference in those early days,” said Sanjana.
With the cleft team and CLAPA onboard we knew we were going to be okay.
“With the cleft team and CLAPA onboard we knew we were going to be okay.
“We met up with another CLAPA parent who answered so many of our questions. And CLAPA’s Facebook group has been the most incredible thing. I’ve used it today. I love reading the stories, looking at the pictures, and being able to ask questions and contribute where I can with my own experience.
“Now we’re through Arin’s initial surgeries, I feel I can be more involved. I’ve been more active with the CLAPA newsletters this last year. That’s how I found out about the photo shoot, which was so much fun.”
Arin is now settling into pre-school, and “loving it”.
Kevin added: “Arin’s such a happy kid, running around smiling, we love him so much and it was great fun to take him to the photo shoot. We’re so happy and can’t believe what an amazing job the cleft team has done.
“CLAPA has been fantastic too, all the way through, and we’re so happy to be a part of this wonderful community.”
CLAPA’s Facebook group has been the most incredible thing. I love reading the stories, looking at the pictures, and being able to ask questions and contribute where I can with my own experience.